P1467: HEALTHCARE PROFESSIONALS (HCP) OPINIONS ON TREATMENTS FOR SICKLE CELL DISEASE (SCD) AND THE HCP–PATIENT RELATIONSHIP: RESULTS FROM THE INTERNATIONAL SICKLE CELL WORLD ASSESSMENT SURVEY (SWAY)
Authors: B. Andemariam, J. James, C. Minniti, B. Inusa, F. El Rassi, A. Nero, C. Trimnell, M. R. Abboud, J.-B. Arlet, R. Colombatti, M. de Montalembert, S. Jain, W. Jastaniah, E. Nur, M. Pita, L. DeBonnett, T. Bailey, O. Rajkovic-Hooley, I. Osunkwo
Journal: HemaSphere (2022)

Background: SCD is an inherited blood disorder that has a significant impact on morbidity and mortality. Care for patients (pts) with SCD may be influenced by HCP specialty and care setting (Smeltzer et al. BMJ Open 2021). Aims: To assess potential differences in treatment and management of SCD by HCPs participating in SWAY, based on HCP specialty and care setting. Methods: SWAY was a cross-sectional survey developed by international SCD experts, pt advocates and Novartis to assess pt and HCP experiences of SCD. Pts with SCD ≥6 years old (N=2145) and HCPs (N=365) completed the survey between Apr and Oct 2019. Eligible HCPs had qualified in their primary specialty by 2014 and were managing ≥10 SCD pts at the time of survey (≥5 pts per HCP in Canada; ≥2 pts per HCP in the Netherlands). Data reflect only the experiences of the surveyed HCPs (recruited by Adelphi Real World Network). Results: HCPs were grouped by specialty (hematology, n=150; hematology–oncology, n=101; pediatric, n=31; general practitioner [GP], n=50 and other [internal medicine specialist, emergency department physician, physician assistant, nurse/nurse practitioner, other], n=33) and care setting (SCD center, n=46; university/teaching hospital, n=105; regional center/community hospital, n=57; private hospital/office, n=109 and other [health center and other], n=48). Most hematologists (82%), hematologist–oncologists (79%) and pediatricians (87%) reported acute (vaso-occlusive crisis [VOC]) pain as one of the most common symptoms discussed with their pts vs 54% of GPs and 42% of other HCPs (chronic pain was reported by 78% of GPs and 70% of other HCPs). Accordingly, 97% of hematologists, 88% of hematologist–oncologists and 90% of pediatricians reported ever initiating hydroxyurea (HU) – a treatment for VOCs – vs 14% of GPs and 30% of other HCPs. More hematologists, hematologist–oncologists and pediatricians ranked reducing VOCs as a top treatment goal (other than a cure for SCD) than reducing chronic pain levels, while the opposite was true for GPs or other HCPs (Table). More HCPs at SCD centers and university/teaching hospitals initiated standard and exchange blood transfusions to help manage their pts SCD than other care settings (Table), yet fewer HCPs at SCD centers than at other care settings reported iron overload as a complication their pts’ experienced (SCD center, 26%; university/teaching hospital, 40%; regional center/community hospital, 47%; private hospital/office, 31% and other, 42%). HCPs at SCD centers were also more likely to provide information to pts in the form of leaflets (SCD center, 70%; university/teaching hospital, 60%; regional center/community hospital, 49%; private hospital/office, 59% and other, 60%) or direct them to pt support groups (SCD center, 63%; university/teaching hospital, 47%; regional center/community hospital, 30%; private hospital/office, 33% and other, 33%). Image:Summary/Conclusion: Hematologists, hematologist–oncologists and pediatricians in SWAY were more likely to discuss VOCs (the hallmark of SCD) during consultation with their pts than GPs or other HCPs. This may be a reason why fewer GPs and other HCPs reported initiating HU, the mainstay of SCD therapy, compared with the other groups analyzed. Moreover, HCPs at SCD centers vs other care settings appeared to be more likely to initiate certain SCD treatments. These results support a multidisciplinary and collaborative approach to SCD care in order to optimize pt outcomes, where each HCP speciality and care setting fulfills distinct but vital aspects of pts’ needs.